The Comment You Should Avoid When Discussing My Lupus

In fall 2012, I had symptoms I considered mild. But in reality, they were a giant slap in the head.

Literally.

A bike ride had me flat on the side of the sidewalk because I was about to pass out. Simple household tasks took days to complete because I kept falling asleep. What finally put me in the hospital was the worst headache of my life. They thought I had a brain tumor. No tumor.

I was in the hospital for days while they tried to understand the cause. The only thing they found at first was that I was nearly depleted of platelets in my blood. As they loaded me up with steroids to get my bone marrow to make more, I argued with them for forcing me to stay in bed.

“You don’t understand,” the hematologist said. “You were on the verge of internally bleeding out. You could have died.” Those last four words smacked me into reality.

In spring 2013, my platelets went bye-bye for a second time. I was urinating blood because I was internally bleeding from an organ (They never did pinpoint which one.) That same hematologist said he suspected the original headache was a possible brain bleed. They ran more tests and discovered my overall condition was lupus.

My rheumatologist and my hematologist proceeded to tell me my medical history, and they both got so much right. My first completed pregnancy in 1993 landed me in the hospital in an induced coma to prevent me from having a seizure from toxemia. My husband was told to prepare for the possibility he might go home alone. Thankfully, he happily left with me and our premature son in tow. Turns out, there’s a connection between that health crisis and my health conditions today.

Shortly after the lupus diagnosis, I joined a chronic pain support group and learned as much as I could. I met others with lupus, rheumatoid arthritis (RA) and many other autoimmune diseases. Some are doing remarkably well, others not so much. Even though I live with an autoimmune disease, it still amazes me how two people with the same diagnosis can have so much variance in symptoms and severity. I’m blown away by the list of doctors I see and the ones my general practitioner wants me to add on. (It’s so overwhelming.)

Just a few days ago, I saw a post on Facebook about a 28-year-old young woman who passed away from complications with RA. She isn’t the first I’ve heard about. Some were from RA, others from lupus.

The comment I’ve heard more than once that makes me want to say WTF: “It’s just lupus. It’s not like you can die from it.”

Now that I’m taking my medications religiously and seeing my doctors regularly, I fully understand I have a good chance of witnessing my grandchildren come into this world and maybe even see them have children of their own. I’m grateful for the medical advances being made at a much more rapid pace than ever before.

Still, please don’t belittle my daily struggle or my medical history. Even though they’re probably strangers to you, please don’t disrespect the lives of those who fought valiantly but lost.

Yes, most people live long, full lives with these autoimmune conditions. But many of these battles are invisible. I can’t count how many times I have been told how great I look on a day I have just taken some strong pain meds just to get out of bed.

The next person who says, “It’s not like you can die from it,” may get a verbal smack upside the head to match the one my doctor gave me.

Lead photo source: Thinkstock Images